[Hope15]

Is there anyone out there that would like to take your worse neuropathy pain and by magic make someone else experience that pain for five lousy minutes? That smug doctor? A significant other or family member who just doesn't "get it"? How about the person who wants to turn it into a competition and claims that there is no way your neuropathy can hurt more then their arthritis, bad back, headaches (or insert any other medical condition). What about the person who assumes that your pain is not really that bad because "you don't say much about it" They have no idea even when you have explained it to them that you sadly have adapted sometimes to being in pain and don't always talk about it.

People who have never had neuropathy need to to put a sock in it when they think things like, "It can't be that bad"...

Just venting.....

[Rrae]

This is the place to do it - mainly because it doesn't go in one ear and out the other, as it does trying to talk to the folks that don't 'get it'.
I can absolutely relate to you (us being up in the MIDDLE OF THE NIGHT because we can't sleep over this mess!!)

My pain doc is VERY complacent in what he does. He's cocky, insensitive, .....unfortunately he's good at what he does....but he just wants to push these SCS's (spinal cord stimulator) and that's IT. As though they are a dime a dozen. GrrrrRRRR

I did the 5-day trial and we went back and forth

Cocky Doc: WELL, Did it get rid of the pain??
Me: Well, it COVERED OVER the pain.
Cocky Doc: I asked you did it get RID of your PAIN?!
Me: It MASKED the pain!! The pain is STILL THERE
Cocky Doc: You are not answering my QUESTION
Me: The pain is ALWAYS THERE. The SCS only COVERS the pain. I turn the stim OFF and the pain is THERE...i turn the stim ON and the pain is being substituted with TINGLING.
It does NOT get RID of the PAIN. It only COVERS the pain.!
((((((GRRRRRR))))))

Anyway I'm probably gonna get the SCS

But YOU BET i would LOVE for this man to feel this pain for one measly hour.

[Aussie99]

Originally Posted by Hope15

Is there anyone out there that would like to take your worse neuropathy pain and by magic make someone else experience that pain for five lousy minutes? That smug doctor? A significant other or family member who just doesn't "get it"? How about the person who wants to turn it into a competition and claims that there is no way your neuropathy can hurt more then their arthritis, bad back, headaches (or insert any other medical condition). What about the person who assumes that your pain is not really that bad because "you don't say much about it" They have no idea even when you have explained it to them that you sadly have adapted sometimes to being in pain and don't always talk about it.

People who have never had neuropathy need to to put a sock in it when they think things like, "It can't be that bad"...

Just venting.....

Totally get it.
My cousin was telling me she had an MRI of her neck and back because she has odd sensations in her face (pins and needles), and her arms and hands go numb due to nerve compression from the discs in the neck. She said this is the worst feeling in the world and nobody can imagine what she feels. No I guess I can't imagine what it would be like to have PN in only a few spots because I have bodywide neuropathy.

[glenntaj]

--of course. And maybe for ten minutes.

[darlindeb25]

I am much meaner than most of you...I always say I want another to feel it for a day or 2...5 minutes will not teach them anything.

I do really like my doctors, and yes, there are times I wish they could feel what I feel. Every time I see my neuro, he says, "So, when do the headaches start, and when do they stop?" How many times do I have to say, "I go to sleep with it, I wake up with it, you tell me, WHEN DOES IT STOP, WHEN DOES IT START????" It doesn't take a rocket scientist to understand that entire sentence, does it? My PCP says, "You look so good, you are in such good shape you will live another 50 years!" And I say, "Feeling like this, thanks!" They don't get it, and for many of us, they can't see it, so therefore it may not exist.

Same for my celiac disease. Just once, I would like every person who asks me if I can eat just one bagel, knowing I can't ever have it, just once I want them to deal with a gluten reaction and know how it feels.

On those days when you are walking, and your foot doesn't lift, they look at you and smile, like...oops, whacha doin there! Duh, nothing funny about it.

Yet we deal, everyday, every week, every month...we are the strong ones, most of the jokers could never walk a mile in our shoes!

[Hockey]

You know those suits they strap on expectant fathers to give them some small sense of what it's like to be pregnant, well I wish there were similiar suits for medical students.

Yes, this is what it feels like to have PN at 3am. This is an epileptic seizure. There, now try and think with a little PCS. How about spending your big weekend with Parkinson's or MS?

Maybe that would keep some of them from morphing into such insensative jerks.

Cheers

[stagger]

Hello,
If all the world leaders and doctors suffered from this crap, there would be and end to war and more money and genius in solving many of the existing medical conditions that plague this planet.

[mrsD]

some tricks to look sick when you indeed are feeling terrible:

Don't dress up for the doctor. Don't put make up on if you are female. Making yourself look wonderful undercuts your believability. If you have to work, just cover the bases, nothing fancy.

Limp some now and then. I find a groan, huff or puff placed properly and not overused, very effective, especially in stores.
Move slowly, and carefully...to avoid trips and falls.

Have more bad hair days than usual. Cover hair with hats, caps, scarves.

If you look in pain, people often believe it...and you don't have to remind them. A well placed groan, in a store is very effective for me!

[JoanB]

Yeah, I've wished that too. Maybe not the people closest to me because they've mostly been pretty good. And with them, I try to remember to mention it if I'm having a relatively good day in addition to saying when it's really bad. My partner has polymyalgia and I appreciate it when she tells me she's feeling a little better.

But doctors--%&*$ yes! And I would never tell any of them I felt better unless they were on the verge of curing me.

[nide44]

I'm with you, MrsD.
I wouldn't wish this pain on anyone else.
But I'm a pretty convincing actor when need arises.
Look in the mirror and create a face that says what you want to say non-verbally.
Practice it in the bathroom mirror, over and over,
until you can put 'the face' on-anytime you wish.
Then go out and use it, along with a sigh, or a slight moan or groan-don't overdo it,
less is more.
Example:
I was trying to rush thru the arport in NY, to make a connecting flight from NY to home. My prevoius flight had been 1-1/2 hours late and I had expected a 2 hr layover to make the connecting flight. That left us with less than 1/2 hour from the time we de-planed until we boarded.

The terminal was about 1 mile away , on the complete other side of the airport and no moving walkways or escalators were working and a baggage push-cart was not in sight.
Rushing thru the terminal was taking its toll on me and I just
decided to stop.

I was carrying a heavy carry-on bag and had a 35 lb backpack on my back - I sat on a stair & just told everyone else to go on ahead, and tell them at the boarding gate, I was bringing up the rear.

At that point my son, who is 6'3", built like a linebacker, and 23 years old, (& is clueless some times,) offered to carry my bag .
Not until I complained did he realize that maybe Dad needed some help this time.

I probably coulda made it, but it was bad enough when I got to the boarding gate, told them to wait just 2 minutes while I ducked into the men's room to pee-and they yelled at me that I couldn't -
"do it on the plane, we're ready to take off."
We then had to carry bags across the tarmac and board by climbing up the steps, to the commuter flight.
By the time I got into my seat, I was 'done-in'.
I really needed that help carrying my bags, and if I hadn't just stopped abruptly, & sat down- no one woulda realized it.